I really need some advice, draw on your experience and anything you can offer.
Liz has been loosing weight quite badly.
She is in a good nursing home and their care and nursing skills are impressive.
Liz refuses food quite a lot. She was refusing a lot of fluids too. We have got her to accepts fluids and she takes a litre to 1.4 litre of fluids a day.
Food wise the cook, who keeps records of what she eats and works around that, has a special machine to make real food into a drink. She is a good cook, everything fresh and it does taste good. Liz has been refusing food on some days.
They also have her on fortified liquid feeds.
Her weight keeps falling.
Liz will not have a PEG. She is adamant on that.
So it appears to me that Ensure has to be the way to go. However the nurse told me that she thought that was not the answer as even with fortified liquid feeds she is loosing weight.
I am lost on this!
We have a nutritionist coming to see her in a couple of weeks. I need to get informed.
Help please.
Thanks
Kevin
xx
(I am quite upset - things are moving faster than I expected.)
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I have just been reading on NHS site about food and drink and end of life stages as Mum is refusing more and more food.
Liz is still drinking a very good amount currently. The home sounds like they provide good nuitrious food, I assume they fortify everything also?
Mum is on Ensure Compacts was on 2 but got GP up it to 3. They will go no higher I was informed as in reality it will not change the prognosis by a great deal as empty sort of nuitrition. I know this is probably not what you would like to hear but this is what our experience was, others may have had different advice. Oddly since Mum was only wanting the Ensures and I told her she could now have 3 a day she manages 1! When she wants to eat I give her what she wants and fortify it. Also try to entice with chocolate alot. Mums taste though has altered and she doesn't seem to like what she used to.
Mums appetite does go in phases and so far not lost too much weight but I know it is a huge worry and we want to get them to eat as much as possible . I've had to tell myself it isn't what her body now needs and try to accept it. Hence why I was reading again the NHs end of life info to reinforce in my head about body doesn't need food as much now and also makes them uncomfortable to eat.
Sending you massive hugs and no matter how we try and wish for this illness not to progress...there isnt too much we can do to prevent it, apart from keeping a close eye for infections and changes that lead to them.
I remembered in the night the admiral nurse mentioned about high calorie desserts and yoghurts so I am waiting for appointment with dietitian as not seen them for 2 years. Id.like those adding to her prescription as another option to try if she wants to eat them.
Losing weight does lead to other complications of course like sores on bony areas and general well being so I hope the nuitrionist is of help to you with some good suggestions.
Since he’s been on peg a year now he’s more or less been the same weight sometimes when he’s had a double dose of infections he can lose some but it’s not a big loss
He does still want drink or food at times but it’s a no go as it’s too dangerous for him to swallow
Colin often refuses to eat, when questioned him on it, he’s says he’s not hungry and if he eats he might need to go to the toilet and that is stressful, so he chooses not to eat, no matter what I tell him, he forgets what I said anyway, then the next day he will do nothing but eat as he’s hungry.
Lately he eats very little, and he is loosing weight, assuming he is making his choices, just keep reminding him he needs to eat a little if something a few tones a day.
My son's neurologist encouraged my son to eat, but told us both that is was a symptom of PSP. And of course, we all know that as food is refused or lessened the stomach shrinks and the cycle begins of less food intake.
The sudden weight loss was shocking for us, too. I had fattened my guy up quite a bit with this in mind, and in the end it just fell away. He had an impressive sweet tooth and was able to enjoy food and desserts almost to the end, and I kept the butter and cream right at hand to add as much as I could. It just wasn't enough. I'm really sorry, Kevin. It's a hard fight.
Oh Kevin feeling sad for you, george has smaller portions, he likes fish pie put double cream in it, sorry Kevin haven’t got an answer, sending you a big hug seems like you need it Yvonne xxxxx
Steve is now on Nutralis as he has this problem also and it seems to be helping. It comes in pots like a thick yogurt and the doctor prescribes it after an assessment from the hospital dietician. Comes in various flavours and he tolerates this really well. He manages pureed foods as well and these are used to supplement his diet as he is losing so much weight.. may be worth mentioning to the doctor to see if he will prescribe. Its the worse feeling in the world seeing our loved ones losing so much weight and having no interest in food as we all know where this leads. Hope the above helps .. just what is being used in our situation (end stages).
Same problem here. My wife is loosing weight also, and does not have enough weight to loose. I try to make all the foods she likes, but still eats very little. Unfortunately, I am the cook here
The other problem contributing is that her good hand is now failing and she struggles to feed herself with it. Either the food drops off or never gets on the utensil. I have been trying to feed her the last couple days but she starts crying. I don’t think she wants to acknowledge that she can no longer feed herself. I was going to post this to see what others have done.
The neurologist just told me to feed her whatever she will eat even if not “healthy”. They have given up on her and only want me to keep her comfortable as she continues to decline
Good luck. Hopefully we will find some wisdom on this from the other contributors.
As long as she can open her mouth a little its possible to feed someone. I have seen cares do a movement where they sort of scrape the food off the spoon with an upward movement using the upper lip to pull the food off the spoon.
Thanks for the good wishes. I'm sending some back to you.
So sad bobby our neurologist has stepped back also but care home have been wonderful and are trying everything to help cake n chocolate are her favourite she could eat all day especially carrot cake but they tempt her with loads of other things and she responds most days and eats x
Kevin I am so sorry that Liz is refusing food on some days but that is how it was with my hubby. Ensure did not help him at all and his fluid intake was not particularly good. During his last weeks my hubby’s weight was going down very quickly no matter what I tried. Our medical team told me that his body was beginning to close down and there was not really anything that could be done as far as nutrition was concerned as he refused to have a peg. I am saddened that I cannot raise your spirits. Hugs to you both Jxx
Good to hear that the home are working with you in trying to tempt Liz. I am impressed at the trouble they are going too. Though I don’t underestimate how incredibly hard it must be seeing a loved one loosing weight so quickly.
I have no pearls of wisdom but I hope others can offer you suggestions.
Dad's weight lose has been quite excessive also. He eats but still loses weight. I talked to the nutritionist and doctor. The simple answer I got was, it's muscle mass being lost through not using the muscles. I guess that could be it, his arms and legs are really thin now.
Thank goodness for this forum, I have found the support from everyone is incredible.
Lovely to hear you were taking Liz home today to sit in your garden. I hope you got lots of sunshine and had a lovely memorable time. Lots of love Nanny857xx
Sorry to hear that Liz is losing a lot of weight. Hope the nutritionist is able to tempt her with some goodies. Thinking of you and sending huge hugs to you. Esther(Teeker) xxx
hello kevin so sorry about your wife Geoff has lost 4 st but he was 16st and I know its not funny but its easier to move him around but I have noticed since we stopped most of his medication he has got some of his appetite back he is not happy with me helping him to eat but his corodinationis shot the specialist said he is not strong enough for a peg he has lung damage [another story road accident ] its no conciliation I know but I just feed Geoff whatever he wants as long as I cut it up very small I think they just get fed up because when Geoff could talk he said its existing not living he is also getting very fed up I really do feel for you because you help everyone but who helps you my thoughts and my heart goes to you you can only do your best you must have very broad shoulders thanks again doreen
I’ve had the the same problem with T when he had pneumonia and the doctor prescribed him ProSource liquid (syrup like in sachets) and Ensure and he gained 4 kilos in 2 weeks. They stopped it after 3 weeks as he started eating well and gaining weight.
I’m going to ask them to put him back on it though, as he isn’t gaining anymore than the 4kgs, after they’ve stopped him on subject supplements, despite his good appetite.
Try to ask your GP for ProSource see if it works, it’s not hard to swallow as it’s quite a thick consistency.
So sorry to hear about this. No real help to offer about her lack of interest in food. In the past for different relatives (we kept my grandmother alive a year after the nursing home said she couldn't make it!) we had some success with using straight cream instead of milk, and homemade broths that had much more nutrition for calories.
Again, you're the one with all the research, it's painful to see that the disease is so slippery and hard to deal with. Thinking of you.
Am so sorry to here this! Understand very well your own feelings.
You are so blessed with that wonderful cook at the nursing home. She is a gem!
When my hubby did not want food/was unable to feed himself, nutritionist was equally 'unavailable' when needed immediately.
Nutritionist is probably right in that Liz will continue to lose weight even with supplements. She is on a different page to you (and us!) in that she would not suggest them in these circumstances. She needs to turn her thoughts around to consider the palliative advantage of using them - will help both of you for a while, and give you a little more time to adjust to circumstances. Have been there, as you know!
For my love, we arranged extra yoghurt, cream, icecream, nutritional supplements. Most favored were of course chocolate! If he ate a meal he always started with pudding, then soup and maybe mash and gravy, sometimes fish, rarely meat. One lovely nurse let me keep a fluids chart. That helped both of us! Until bosses said unnecessary!
My thoughts - give Liz whatever she fancies; immaterial if it is treat food or not; try soups with bone broth; try the supplements. I found the ones we had tasted horrid! I found Complan from supermarket or chemist tasted reasonable, choc vanilla of course. There was a lot left.
You are doing all the right things, Kevin! It's an uphill struggle for you, I know, and sadly, a downhill journey for Liz.
Make some chocolate moments together! The tasty chocolate, not the stuff that is supposed to be good for you! We had Cadbury's chocolate buttons. Two or three times a day between meals! Who cares!
You have been so helpful to us all, in so many ways - it is ultimately unjust that we would not be helpful to you. However; Reading your account of Liz: I can't see how there is anything that has NOT been done for her. (I also assume that her PCP or physician connected to the nursing home has ruled out a GI tract infection of some sort?). I also assume that she gets whatever she can handle and no-one pooh-poohs it because too much fat, etc? She should have whatever she can handle!
If no infection, and the nutrition is good, the monitoring is good, the quality is good....Is it possible that Liz is shutting down? When so much effort has been put into making her well, it seems impossible that she wouldn't thrive - but we know this sneaky disease....
I hope I'm wrong: but in any event I wish I was there in person to give you the biggest hug and a shoulder to weep on. I will be watching this site for updates.
No, there are no infections and she is strong (in her health). That is why I am surprised at the degree of weight loss and the home indicating that her situation is getting a little critical.
This disease is just ruthless. Dan is still able to eat and is just beginning to have a few problems coughing with thin liquids, yet he lost almost 40 founds in 5 months . Now his weight has stabilized , but I believe it will soon take another downward turn. For the most part he enjoys food, but the apathy of PSP consistatly stops him in his tracks. He begins to eat and 20 minutes later has one bite gone and the sandwich perched next to his mouth. He enjoys the food and wants it, but his interest fades.
Do you think that PSP just causes such a strong feeling of apathy that Liz just isn’t interested, or is she truly opposed to the idea of eating. Do you have any idea what her caloric intake is? As others have suggested, both protein and calories are easy to increase in a sweet smoothie she might enjoy.
This too may pass. You’re in all of our thoughts . So many hugs on their way to you and Liz.
So sorry Kevin, after all the help you give to everyone and it does not seem as though any of us can reciprocate. You are doing your very best and the home sounds brilliant. Big hug to you Pauline x
Unfortunately I can’t offer any advice on your lovely wife’s weight loss but I did want to acknowledge your plight for information. You are our oracle here and you help so many others I hope that you find some answers. Sending positive thoughts 😘
Thinking outside the norm...Sinemet and Mirapex can cause weight loss if she is on any. There is a medication sulfasalazine that is used for IBD and arthritis, but it increases appetite. Just a thought if the loss of appetite is worse from a compounding issue. For the first time in years I can eat some with this medication. It did take several weeks though. THC (even small amounts in CBD) can increase appetite If legal for medical purposes. And I presume she has no other infection that has cropped up? Thinking of you
Kevin I am in exactly the same stage as you. I am worried too. My wife just clamps shut sometimes. It took me an hour yesterday to give her 150mils tea. The nursing home she is in is good too but staff are trying their best. She will only take sweet things now. Peter
That clamping shut and nothing happening is so what we get.
Now I put the spout of the covered cup just inside her lips and encourage her to suck. On other days an open cup tipped and pressed just inside her lips is better.
I transfer the comments of a family member who is a hospital doctor about the reasons why a hospitalized patient does not want to eat:
1) When they spend a lot of time in bed or without moving, they lose their appetite. Some exercise (passive and active) can improve the situation.
2) It takes a great effort to eat and swallow and do not find the strength to try.
Among other reasons because they do not eat. Vicious circle.
3) They are just letting go.
They often have more appetite for breakfast than for lunch and on lunch more than dinner. If so, make a balanced, attractive and generous breakfast.
In the event that they finally eat very little, in Spanish hospitals they usually use preparations such as Ensure or preparations for babies.These preparations are usually well balanced, digest well and have many calories.
Darling Kevin I am extremely saddened to read this, but I’m going to tell you something I learnt on a carers course I did at the hospice. Something that stuck in my mind is that when someone is ill they generally don’t want to eat, think about this as yourself first, then think about Liz and how actually terribly ill she is! When you are under palliative care and no longer mobile, your body doesn’t need or want much food or drink, this answer may seem harsh and I apologise for that, but I think we are all natural feeders and I personally think this isn’t the time to be feeding. If Liz is complaining of being hungry she may manage a purified meal in a drink, otherwise I would say as long as she is comfortable you have to go with it. Another heartbreaking time with Psp and I’m truly sorry!
Hi Kevin. I feel so sad for you cos I know where you are. Although Valerie's general health was good - few infections , no colds etc she just kept losing weight and in the last month although she didn't stop eating altogether the weight just fell off her.
I was probably in denial and wouldn't accept the end was close - right up to the last day.
We all know how this wicked disease ends but it doesn't make it any easier to accept. Just be strong , love her and be with her - it's what she would want.
Best wishes Bryan
ps it's been a month now but I still can't read these posts and replies without crying.
I have no pearls of wisdom to offer. I am so sad to read your post. I do not contribute much to the forum but I read them daily and you have been a tower of strength to so many on this page.(including me ). My wife ( Liz also) was exactly the same and I tried everything to encourage eating, but she simply would not. She lost a lot of weight and in the end I think she just gave up. Not what you want to hear, I know, but facts are facts. I pray that Liz manages to get through this stage in this horrible PSP disease. I also pray that you find the strength to keep going in your fantastic battle for your Dear Wife. Sending very dear wishes to you and your wife.
Kevin my heart goes out to you.It is strange to hear you asking questions instead of giving answers and I know it is a time of feeling helpless to you.My beloved Don always had a good appetite right up until the end,but still lost weight.He was in nursing home his last 6 weeks and he would eat anything and everything they brought him,plus soft snacks like pudding that I brought him. On the day before he died I discussed with the dietician the texture of a dessert they had brought.It was somewhat dry and was causing him to choke and cough so much that I did not allow him to eat it,but he wanted it so badly.Even with his good appetite he lost 30 lbs.those last 6 weeks. I hope your Liz will enjoy her trip home with you and you as well.It is something I wish I could have done-my Don wanted to come home so badly.Just know you both are in my thoughts and prayers!
You were a fantastic carer for Don. I'm sorry he did not get to come home, but sometimes it is not do-able. I don't think Liz will get many more visits. One step at a time.
We sat by the pond in the sunshine today and watched the tadpoles and various other wee beasties whilst I talked and she responded with squeezes. She told me not to worry as she is happy to slip away when the time comes and I am absolutely forbidden to push for any further intervention to maintain her weight beyond what she is on.
Don hasn't been gone that long. I do hope you are finding your way.
Kevin, when my husband started his condition he lost 15 kilos out of 74. Since then he only has gain back 3 and he eats pretty well. It is important to know if she is underweight . My experience with my mother (she died 3 yeras ago same time Dave started this journey) is less weight on a patient is very helpful to manipulate the body. With all my respect, we all have done our work in this hard process, but there are things we have to let “Mother Nature” take care of. You have done a lot not only for her but for all of us. 🌹 Patty
Ahhh Kevin I feel your pain Mum was loosing weight rapidly and I posted o. The site can’t remember who it was but they seemed to think CBD increase metabolism and no matter how much someone is eating they still loose weight now in a care home Mum is eating everything I. Sight and has stabilised a bit but I think it will be short lived don’t have an answer I am afraid but my thoughts and love are with you x x
I think you are right. I can't find any specific research, but what I have found and listening to you and others on this thread it appears that first of all there is muscle loss due to inaction.
Then there is difficulty swallowing coupled with lack of interest in food (for many).
Finally there seems to be some sort of metabolic failing where food is not utilized properly.
This is precisely our story (see Katiebow's post to mine) as even nutrition can' take away the starvation. Charles' face is so gaunt it is distressing. Eyes are not wide open, slits sometimes, and he is so very tired.
I think they will stop eating when they are too tired. He, like Liz, doesn't want a tube.
So Kevin, here we are dear friend! My stomach tied in knots as I write this and holding back the tears.
Yes, like you with Charles, I look at Liz all crumpled from muscle wasting and starting to get gaunt. She looks so vulnerable.
Big hugs to you. That's where I was at yesterday before all of these informative supportive posts came in. I'm holding the tears a little bit more at bay... this minute.
What can be said to someone watching their loved one fade and fail... I and many others are here for you.
I`m so sorry to hear this about Liz but we too are having this exact problem. P just purses his lips and won`t eat or else he holds the food in his mouth then slowly spits it out. He`s lost 4 stone over the past 2 years and 2kg in the last 2 weeks. The nurse says that the GP would recommend hospital for an I/V drip but I don`t think we want that to happen. It`s so hard isn`t it ?
I'm so sorry. Isn't it distressing. Can P say why he is doing this. Liz was doing that in protest. It's stopped now.
2kg in two weeks is fairly serious if it continues.
You might speak to the GP. I suspect the nursing home is covering their butts. An I/V is not an answer. Neither is a nasal feed tube. Both are interventions in acute situations and they cannot be used longer term.
I'm so sorry for you.
It sounds like a meeting in the home with you, P and the G.P. is in order. Whatever the G.P writes up will be O.K for the Home in most cases.
I had a talk with Liz today using our question and hand squeeze replies. Liz has told me that she does not want to prolong her time with drastic calorie interventions, but to let the weight fall and her to slip away. She's had enough.
This breaks my heart to read but also I feel an immense feeling of love between you both. It is beautiful she feels able to talk about her wishes and that you are there for her to have these discussions and carry out her wishes. I hope in the future this will be of comfort to you.
Hope you are both coping with an impossible (and painful) situation.
P can`t communicate very well these days and honestly, I don`t know if he`s making a conscious choice with food and drink. If I were to ask him directly if he knows what he`s doing, I would expect that blank stare.
I feel Liz’s effort to help convey her wishes to you is truly a gift. Although nothing can ease your suffering and worry, I hope you find peace in knowing you are her strongest advocate and continue to do your best to respect her wishes. She’s one tough lady. I bet you two were amazing together 💜
I'm sorry to hear that you have reached this stage - it is heart breaking, and if you are a person who likes to be able to control the situation and resolve issues it's even harder because you feel so powerless.
My dad lost a lot of weight in a very short space of time, as his swallow deteriorated so did the volume of food and drink. Food was his only pleasure and to see it taken away along with everything else was very difficult to witness.
Like Liz, dad didn't want any interventions, the nursing home used higher calorie ingredients where possible and nutritional supplements where possible but this was only in the last week's of his life and Ultimately did nothing to slow down the ceaseless march of this disease.
Liz sounds like a strong woman, but you will need to be even stronger to support her through what is to come. So much love and respect for you both. Kevin you are a strong and help so many more people with your knowledge and support here, I kn ow everyone is rooting for you! X
Kevin, sure wish I had a great suggestion for you but everything I thought of has already been said. Michael is losing weight also but not dramatically, only a pound or two per month which is enough. His seems to be muscle mass.
Home has put him on Ensure Clear which he will drink willingly since it tastes like fruit juice.
Hi Kevin, Ben has also lost a great deal of weight, skin and bones now although he is still eating puréed food. He hates the fortified foods/drinks so I don't give them to him. He still refuses PEG so. Am just going along with him and concentrating on trying to keep him painfree, I just want him to enjoy the things I know he likes as I know he would welcome death and be free of this horrible disease, he has made this more than clear to me. I guess you know that Liz still wants you to fight for her, it's a very personal thing isn't it.
It's awful Kevin, but I am coming to terms with the enivitable being just around the corner. The Parkinson's Nurse had a very frank talk with us last week, she knows Bens wishes not to be kept going artificially and Ben still makes it known that's still what he wants. She also spoke to him about being kept comfortable even if it means using medication that will cause him to sleep more (again what he wishes) she explained that this may mean him less eager to eat and drink and he still agreed that's what he wants. It's so hard to not keep trying to keep him strong enough to battle on but I realise that's for me, not him.
By the way the physio explained to me that the weight loss is due to the muscles being kept rigid, constantly using up energy, seems a sensible explanation to me.
Hi Kevin. Sorry to hear your news. I had the same problem with hubby. He had a PEG fitted but the weight loss was extreme. My solution was shakes, one of the dietitions suggested it. Extreme shakes, containing extra thick double cream, ice cream, complain and fruit. They were delicious and fit the trick. Another thing that went down well was bananas fried in butter with brown sugar, when nicely browned add some brandy or any other preferred tipple. Let cook for a while, delicious warm with ice cream or whipped cream. Now
I feel hungry! Good luck, hopefully you find a solution. Love Maddy x
Liz is on liquids only now, but you are so right about all the high call stuff. The homes cook, who is superb, is coming to the meeting with the dietician. Liz is already on all sorts of high call drinks and liquidised hi call food. Part of the problem has been her not eating much. That has improved a lot lately.
As for your bananas, chuckles, that is one of my favourite comfort foods.
Bananas laid in an oven proof flat bottomed casserole dish with a knob of butter, two desert spoons of marmalade and some fresh orange juice and a slug of brandy or sherry, sugar to taste, Baked. (Can substitute fresh orange juice and zest. Serve with cream or ice cream. That'll teach you to make me feel hungry lol.
Hi Kevin. Glad you like the bananas too. Hubby couldn't eat any more but the fried bananas went down a treat, he liked them already before PSP. Another food that he was able to have was ambrosia's custard and rice pudding (needs some flavour added). Hope all goes well, thinking of you. Maddy xx
Hi Kevin how are things? I am so sorry I havent logged in here for a while...I find everything so difficult to cope with emotionally. My lovely Mother is also struggling to swallow..we are at the same stage I think? My Mother struggles to swallow anything. I hold my breath when I feed her to see if she can swallow the pureed mouthful I give her. We have to make a decision within the next 2 weeks about PEG feeding...how are things with you? sending my love and hugs
Yes, I get emotionally drained from time to time. It makes even the smallest task a mountain climb. Love and loss combined with the caring struggle is tough. I hope things pick up for you soon.
I'm so sorry you are facing this stage of swallowing and food. Liz can still just manage pureed food. She is getting a lot more food as fluids now. We too will have to face the time when she cannot swallow and then that will be it. She does not want a PEG. I am steeling myself for that time.
Liz was in good fettle today. I read Georges cat post out to her and showed her the photo of the cat watching big cats on TV... She beamed a smile. We hugged and I gave her the news and her spirits were up. Some days she is very low. They're the hard ones.
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